The Importance of the Primary Care Physician in Dementia Patient Health Care

Health care, the dementia patient, and the Primary Care Physician go hand in hand.

The dementia patient may be dealing with memory loss, confusion, weakness, dizziness and several other symptoms. If they feel sick or have injured themselves they may not be able to tell you. They may also suffer from depression which can lower the body’s immune function.

In addition to the complications from dementia your loved one may also be suffering from other illnesses. Proper health care is essential.

Our Primary Care Physician Experience

Our Mom had injured her back in 1987 and had had multiple surgeries to correct that problem. She was never pain free from all of the back and neck problems. She had grown immune to the pain relieving functions of many drugs.

In addition to the back problems she also had multiple blood clots. For some reason the Drs. were never able to figure out, her body didn’t respond properly to blood thinning medications. We were never able to get her blood to clot properly. This complication caused her to be admitted to the hospital numerous times.

As we have written on the page about handling anger we had issues with her former Primary Care Physicians. She had her first blood clot problems in 2001, about the same time we started noticing her memory problems. The Primary Care Physician (PCP) she had prior to her blood clot had the “It’s good to see you again. Here’s your prescription for the drug of the month club. See you in a few weeks!” attitude. Not a healthy approach to health care, especially for a dementia patient.

When we first noticed Mom’s memory problems we were on vacation with her in Reno, Nevada. She would repeat herself often, forget where she put things, and was just generally confused. We were sure it was because she was on so many medications. They had to be interacting with each other to cause Mom to be so absent-minded. We realized that we needed to take a more active role in her health care.

Before we had a chance to research this possibility she was hospitalized with a massive blood clot. She required 5 blood transfusions! The Drs. couldn’t believe how low her blood count was. They removed her from all of her medications cold turkey and put her on Warfarin to break up the clot. She was hospitalized in Reno for almost a month.

When she returned home, although she was still off of her medications, she still had her memory problems and became very paranoid of the help we were trying to give her. She thought we were trying to steal her house and put her in a nursing home. That wasn’t even close to the truth, but she wouldn’t accept our reassurance. We didn't consider her to be a dementia patient at the time, but we were starting to wonder . . .

As part of caring for her we switched her Primary Care Physician to one that was a short drive from her home, partly because of the short driving distance, but mostly because we didn’t want her back on so many medications. At first the new PCP we chose was very attentive. He listened to Mom, asked questions, gave her a physical exam. He seemed to be a good choice.

Maybe She's Not So Bad . . .

She continued to manage her own affairs, including her health care needs, with occasional help from Paula and her family. In 2003 she remarried (Her first husband, our Dad, had passed away in 1997.)

In 2004 her new husband had his voice box removed due to cancer of the larynx. Mom drove to see him in the hospital and headed home in the early afternoon. She took a wrong turn and ended up hours from home. Finally she was able to get the right directions and made it home very late that night. She was exhausted and quite shaken up even as she told Paula the story the next day.

Paula assured her that everyone makes mistakes, but the memory problems seemed to get worse after that. We were convinced by now that our Mom was definitely a dementia patient.

To compound the problem, her husband was no longer able to speak. He could only communicate by writing things down. When Mom would start to do something dangerous he wasn’t able to effectively correct her. This made it difficult for him to be a caregiver to a dementia patient, but After awhile they managed to work out a way to get along with each other and to communicate well enough. They had a regular routine that helped them to know what to expect.

During this time period Mom was seeing her new PCP about every 3 months and occasionally more often if she had increased pain or wasn’t feeling well. We don’t know if it was from the frustration of Mom not being able to effectively communicate with him, her husband not being able to communicate except by writing notes, or just that Dr. G saw Mom getting continually worse and knew he wasn’t able to help her, but he, too, joined the “prescription of the month club.”

As the time went on Mom’s husband would share with her Dr. at every visit that she was getting worse. He would give him detailed lists of examples of her increasing forgetfulness, but the Dr. would just nod his head. He finally wrote her prescriptions for medications designed to slow the effects of Alzheimer’s, but by then she had gotten pretty bad. If the drugs helped it wasn’t noticeable.

Time for A Different Primary Care Physician?

Finally, circumstances forced us to deal with the problem. Our step-dad had decided to switch insurance companies in order to save quite a bit of money each month and Mom’s PCP did not contract with the new insurance company. So we had to find a new Primary Care Physician.

Our step-dad’s Dr. was one of the choices. He really liked her and we thought that if he was satisfied with her, and he wasn’t even able to speak except through notes, that she would probably be a good match for our Mom also. Plus we would have the added benefit of her knowing the complete home situation so she would be more knowledgeable in her decision making. We set an appointment to establish Mom as a new patient.

The Inconvenience of Not Having a Primary Care Physician

She had been hospitalized because she had fallen and broken her nose and her toe, and also injured her ankle. It was the injury to her ankle (that never healed) that eventually led to tremendous pain and, due to complications with the wound and the blood clot, hastened her death. We wonder if she had been able to have been treated more quickly for those injuries if, perhaps, she may have lived longer, but there is no way to know.

Ultimately having our Mom under the care of Dr. W for the last seven months of her life made our lives much easier and pleasant. We had finally found a PCP who cared what was going on mentally, physically, and emotionally with our Mother. She also listened to us and to our step-dad and looked at the family as a whole when making health care decisions for our Mom. We are very glad we found her.

The Value of a Good Primary Care Physician

If possible, interview several Drs. over the phone explaining your loved one’s condition and asking questions about their care and treatment methods. If you aren’t able to interview the actual Dr. try to interview their Physician’s assistant or one of their nurses.

Once you find a few that you think will be a good match. Schedule an appointment as a new patient with them to introduce your loved one and yourself. Ask any additional questions and watch how they interact with the dementia patient. (Make sure you follow your loved one’s insurance company’s rules so that your visits will be covered and you won’t be stuck with large co-pays or unpaid bills.) Once you find a Dr. that you like be sure to notify your insurance company of your choice.

Keep the lines of communication open between you, your loved one, the Dr. and the Drs’. office staff. If you have Medical Power of Attorney over the dementia patient you should be able to ask any question or voice any concern and get answers, referrals, and resources that will help your loved one and yourself in your caregiver role.

Between visits keep notes about how the care recipient is doing. Note their eating and sleeping habits and any new symptoms they may exhibit. A good Dr. will want to know about these details and it will help you both to make better decisions regarding their care.

The dementia patient’s Primary Care Physician will be the one person who knows all about your loved one’s health care. They will coordinate the medications, treatments, and therapies that other specialists prescribe or recommend. They have the authority to refer the dementia patient to other specialists who can help with the individual health concerns. Take the time to develop a relationship with them. It will be a valuable asset.

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